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Sunday, June 20, 2010

A Week and a Half of Crohn's Gone Wild

ok so I was supposed to do a post about my Crohn's going into a complete whirlwind, but guess what...I didn't. Why you ask? Well Miss Allison Kelly yet again ended up in the hospital with her lovely disease. So there will be a lot of catching up.

It all had started June 9. Mrs. Becky asked me to ride with her to Mobile to pick up some pictures so I rode. For some reason that day I was so nauseous...my appetite was gone...and as the day progressed everything got worse. I took Phenergan routine and it seemed to help.

June 10 - Thursday - Same thing...nauseous all day...stomach blew up...thought to myself ok...I can handle this...my Crohn's is just irritated. Well that day Mrs. Rene came over and flushed my port. I had told her that my Crohn's wasn't acting right. Still loaded up on Phenergan and it seemed to be doing ok. Started using the bathroom more. There was not much consistency and the smell was bad again so I knew the small intestines wasn't absorbing again.

June 11 - Friday - Same again. I didn't think things would get worse though, because I'm used to having bad days. Well I had to start taking Zofran because the Phenergan wasn't cutting it. That night Andrew and I loaded up with Allie and we went to Vineland to visit Martha, Ryan, their family, and Michael came to meet us. I just took the Zofran routine that night and just tried to tough it out. My appetite was gone and I didn't eat hardly at all. We had a fun time together.

June 12 - Saturday - This is when everything go BAD! I woke up that morning and told Andrew something was bad wrong. Well I woke up...appetite gone and I was nauseous on a scale of 0 - 10 about a 20. Ran to the bathroom threw up 3 times. Ended up on the bathroom 3 times. I was like ok...I'm dehydrated for sure...tried to get some fluids. Didn't feel like that. We were at Martha and Ryan's again. Well we were all going to get lunch. I was scared to eat. Couldn't eat...finally made myself nibble on a few cheese sticks (since cheese binds and bread is good on tummy). Well I managed to keep that down. We left their house about 3 pm and headed to Andrews.

When we got to his house I thought I was ok. Then started feeling bad again. I took a pain pill because my stomach started killing me...and then I took my Zofran routine because the nausea hit. I made myself eat a little supper and ended up on the toilet. Andrew came to check on me. Well he helped me back to his room. He carried me and put me in the bed and layed with me trying to rub my back to put me to sleep. He gave me my pills and a sleeping pill. I bawled for about 2 hours straight. I knew I needed to go to the hospital, but to be honest...I just feel like a burden in so many ways that I wanted to try to tough it out. Well that was wrong on my part. I called mom and told her what was going on. She talked to Andrew and she agreed telling him to just try to get me to sleep and let me know when I had gone to bed and check in with her. Well I did fall asleep and her and Andrew stayed in contact.

June 13 - Sunday - Woke up...stomach felt like I had been punched with brass knuckles from the top of stomach all the way down to pelvis. I took some pain pills and took the Zofran. We went to my house that day. Things still were bad. Andrew tucked me in bed that night...mom was asleep since she had work and I didn't want to wake her. I cried in the bed and told Andrew I couldn't do it anymore.

June 14 - Monday - Same thing happened again ALL DAY! I told Andrew I was calling Dr. Rodriguez. I called him. He didn't seem like himself. He sounded busy and like things weren't going right. I told him about the throwing up, lots of using bathroom, joints feeling like they were falling apart, the pain. He was worried that I had gotten severely dehydrated. His nurse told me to come immediately to Mobile ER. Well then he calls back and says no to. We were almost out the door at that time. He told me he was worried I was too dehydrated and didn't want us chancing it an hour and half to mobile. I called mom and told her he canceled. So he put me on a strict fluid and bland diet. He told me to drink Gatorade constantly and told me to tell Andrew to push fluids down me and to constantly make sure I was eating something (he calls it grazing lol). Well I did that all day but it was so hard. My appetite was GONE! Well that night things weren't better. I was taking my Levbid (hyomax) for my stomach locking and it wasn't working. I went to bed that night telling Andrew I was afraid I was going to die. My body felt like I had been run into a brick wall. We agreed that in the morning we were going somewhere because it had been going on for almost a week.

June 15 - Tuesday - Wake up. Call Dr. Rod again. He still doesn't tell me to come and I got really upset. He told me that if I was worried go to my primary care. Well that upset me because these local doctors don't know how to deal with Crohn's...especially a chronic/sever case like mine. Well I was in so much pain and crying that I didn't care. Andrew loaded me up and we went to Jackson ER. I didn't want to go to Grove Hill because of the last experience and I really didn't want to go to Jackson. So I wait in the ER for an hour and half in excruciating pain. They finally get me back. They access my port...still don't get me pain medicine...do a CT...take me to a room...still no pain med...by that time my pain threshold is untouchable...which they wouldn't know that because they don't know a STUPID THIN ABOUT CROHN'S. So finally I get mad and they give me FREAKING 25 DEMEROL THROUGH A DANG DRIP! How idiotic is this. The drip ran in 15 minutes...nothing...I started bawling...I told the nurse 25 was like giving me a Tylenol...so she gave me 50 more...well like I said my threshold was out of control so it did no good.

I stayed in pain the entire time. They treated me like I was a druggie. Even make little remarks...doctor did as well. I was thinking...why in the heck would I have waited a week to come to the hospital if I wanted drugs. People have no heart. People do not have a clue the pain that comes with this disease. I finally argued with the doctors and nurses telling them I was not doing the drip anymore. It wasn't working and it was not as effective. They argued that it was...which later when Dr. Rodriguez and I talked he had steam blowing off of him. So anyways...finally they talked to the DON and she agreed to push the 75 of Demerol and give the Phenergan drip. They even made the remark that I just wanted the "rush" or the "high"...do you know how bad that hurt my heart. Yet again....WHY WOULD I HAVE WAITED A WEEK IN PAIN IF I WANTED A HIGH! I have oxycodone in my purse that I don't even touch unless I can't move...who are these people to tell me and judge me. (all that did was add stress which made my condition worse) ALSO...MY BLOOD PRESSURE NORMAL FOR IS 80/60...MY BLOOD PRESSURE GOT UP TO 150/97....THAT MEANS PAIN...THAT IS A STUPID SIGN!!!!

Ok...moving along...

June 16 - Wednesday - Another day in the hospital. They couldn't figure out what was wrong...the CT wasn't showing anything. Then he came in and told me my C-Reactive wasn't elevated...well duh it wasn't. See with most Crohn's patients their C-Reactive Protein is elevated with a flare...when I say I HAVE A BAD AND RARE CASE...I'M NOT LYING...when I got diagnosed with chronic Crohn's (actually looking at the damage in my intestines) my C level was not high...so to tell me it isn't elevated doesn't mean much. I'm different. Well you can't tell a small town doctor who doesn't know my case that because he isn't going to listen. I stayed on pain medicine all day. I was out of it...but I wasn't knocked out...if 75 Demerol doesn't knock out a 119 pound little girl...she must be in serious pain. Yes I talked out of my head...yes I was emotional, but what would you do if your pain was not being managed and people were speaking rude to you.

I'm not even going to write anymore because its going to make me cry if I keep elaborating on my stay there.

June 17 - Thursday - I talked to Dr. Rodriguez on the phone. I was upset with him. I told him I was disappointed in him. He got upset at that. I told him I wasn't being managed that I didn't want to be there...all of that. Well Dr. Hussein...whatever...told me they couldn't keep me in because they couldn't find anything. So he set me up an appointment with Dr. Rodriguez for the next day. Now while I was in the hospital I was taking Steroids (solu-medrol) Prtonix, Phenergan, Demerol...blah. They do another x-ray Thursday nothing...I'm still in dying pain but I'm so ready to get out of their I could care less. They let me go home...Dr. Hussein was going to give me Lortab. I laughed...I told him it wouldn't do a thing. He asked what I took...I said well I take Darvocet but that is for the rectal pain only that it will touch. I told him I had oxycodone but I saved that for the bad days...well the jerk didn't write me a prescription because he said that he didn't want me to have a lot of different things from different doctors (Dr. Rodriguez was later steaming with this as well). So that day I had to break into my stash that I don't touch. I will not write anymore about this day because I will cry. Let's just say yet again I thought I was going to die.

June 18 - Friday - I wake up. I feel like death. Andrew, Mom, Dad, and I go to Mobile. My appointment is at 3. I'm running a temp...my weight is 123 from all the steroids and fluids and I'm in terrible pain. When Dr. Rodriguez walked through the door he could tell it was bad. He shook everybodys hand then looked at me like he didn't have enough apologies. I'm going to cut the story short...He apologized...he hugged me...he got mad at the treatment they used for me...he got mad at the doctors remarks...the pain not being managed...the not prescribing pills...he told me in simple terms that small town doctors can't conceive what a Crohn's patient is going through. He then said that WOULD NEVER HAPPEN AGAIN. Next time I WOULD BE IN MOBILE...and HE WOULD SEE ME OR HIS ON CALL DOCTOR. He said he had indeed had a bad week, but it was no excuse. He didn't think that it was all an attack. He was thinking that with the treatments lowering my immune system, my body picked up something that ignited and threw the Crohn's for a craze. It made sense with the body aching and all. Well he put me on a strict steroid schedule, levbid, and acid reducer, and more stuff. He then told me that if I start getting bad I can't wait...he said feeling like a burden is going to get me nowhere except worse. He said the minute I feel pain to take a pill. He told me that with Crohn's you have to manage the pain the second it starts...the pain with Crohn's advances so fast and harsh that it reaches a point of where nothing can touch or manage it. He told me to quit being a martyr. It felt so nice to know that he understood. I cried and told him that I was just hurt by him. He told me that it had broke his heart to know that I was disappointed in him and he felt he had let me down. I told him...I was like I just wanted you to fix it because I knew they couldn't. Well that all got settled. He told me that it was going to be a while before I was going to be ok...it's just my case...and I'm going to have to deal with it. We left out of there and felt so much better.

Well we got back home that night. Guess what...I am pretty sure I DID INDEED HAVE A BLOCKAGE. Ok...so I didn't have a bowel movement for like 4 days...yes I didn't eat and lots of pain meds, but still I should have. Well that night I went to the bathroom...beware I'm going to get graphic so stop reading if you don't want to know...well I used the bathroom and it felt like I ripped open. It was so large...it looked infected and the smell was terrible. When I wiped I was just oozing green out. I had definitely had a blockage...that is one of the worst things for Crohn's. I came out of the bathroom and for sure took some pain medicine lol. I told them family and they were like well at least we know. I told them I would tell Dr. Rodriguez Monday (which is tomorrow).

That night was rough but I took my medicine like I should and my love tucked me in.

June 19 - Saturday - Rough Day. Lots of pain...out of it...body weak...just bad all together, but happy to be home. Andrew wasn't with me which made it hard...he was at his family's house because his brother and his wife were down. His brother and I get along fine, but Hope and I haven't talked in a while...that's a long story. So I didn't need to be there because stress is bad on Crohn's and I didn't want to mess up the family time...stress can cause a flare for me in .2 seconds. Well I felt bad as I said...but I rested...my sweet friends came and visited me and kept me company...that lifted my spirits. Went to bed.....

June 20 - Sunday - Brings me to today....it was a hard week and a half. I thought I was going to die a couple of times, but Jesus saved me. Thank you all for your love and prayers. Today I had a positive spirit and I know it came from nowhere else but Jesus. It hasn't been a wonderful day, but just the Spirit was wonderful. We had a great Fathers Day with my daddy and it was a lot of family time. I took my pills like a good girl...and only managed to take a pain pill 1 time :)!

Thank you to my friends who called, texted, came by, checked on me...everything you did...thank you! I have been blessed :)

I wrote this so fast so it might not make a bit of sense, but I needed to do a catch up. Crohn's is a never ending roller coaster battle...you never know what the next day will be or what it will bring... but oh is my testimony growing stronger with each day! My God is good! :)

This was Friday Night the 11th

This is what Saturday Night June 12 Consisted Of

Just a picture of Andrew and I in our Take Steps for Crohn's Shirts :)

9 comments:

aww...Allison, bless your heart! It seems like your doctor is back on board, so hopefully you will never happen to be under a physician's care who doesn't know YOU or YOUR case. That seems really scary! I don't know what I would do if I were put in those shoes!

I completely understand where you are comming from with the pain meds. When I was in the hospital last time (2weeks ago) there was a woman there who was ONLY at the hospital to get her pain meds aka "to get high" & all of the doctors and nurses knew exactly why she was there. It's people like that lady who make nurses and doctors hesitant to give pain meds to people they have never seen before because they don't know them or know about their case. Therefore, lots of people, who are TRULY in pain, have to suffer a great deal before they get any relief.

Because of addicts, I have to call my own doctor everytime I have to go to the ER to ask him to call the hospital and let them know what meds I need to be on...and so that he can explain my case...I am just so afraid of being stereotyped! I don't think a lot of people truly realize how painful Crohn's can be. I'm being COMPLETELY honest when I tell you that I would MUCH rather give birth than have to deal with the pain caused by Crohn's disease!

I am finally starting to feel some relief. I am taking Prednisone, along with Remicaide. I just received my third consecutive treatment last week, so maybe it's starting to work. I just hate being on the steroid! The side effects are so yucky! Are you still having to take a steroid as well?

Jamie! I know...it is a roller coaster...all I can say is you have been a rock for me through all of this! I thank God for your encouraging words and uplifting spirit to me. God has you in my life for a reason. Andrew, my family, and I love you to pieces...I just wish we could be together so often! You always check on me...and you truly know what I suffer...thank you for being a TRUE friend!

Kelly!! I have missed you! It's so good to see you writing me...the whole time in the hospital I was thinking of you and missing you. Just because I KNOW you KNOW what it is like! I had to call Dr. Rodriguez as well to tell them my case...and that is the ONLY reason they pushed my pain meds to the max!

I am still on steroids..I got put on a strict schedule of Prednisone since Saturday and the medications are so many a day for so many days...its really confusing. I honestly have to say that I have had such a positive attitude the past two days. I don't care that I can't nurse anymore...I think I realize that I could die from this and I just want to be happy. God has just cleaned my slate and given me a new outlook on life. I'm proud I got my nursing degree...it gave me knowledge and I feel blessed to have accomplished the feat. Now I'm moving on with my life just trying to fight Crohn's one day at a time. Like I said...I am still on the Prednisone...I am hungry like a monster and run fever like an oven lol! My next Remicade infusion will be July 8...that will be my fourth treatment. Dr. Rod and I can't tell any great improvement...but its like he said...we are trying to catch up 21 years of untreated disease. So I understand as he does that it will take a LONG time.

I am so happy writing to you right now Kelly! I cannot tell you how much I have missed you. How much I have wanted you by my side. It feels so nicce to have a Crohn's partner. The entire time I was in there I was wanting the internet or your number to call and just talk to you. I hope your treatments will kick in fast for you. Just make sure not to stop the Remicade...once it stops your body will build antibodies and you will never be able to take it again. Dr. Rod was a pharmacist before gastro so he KNOWS SO MUCH about meds.

I hope you are having a good day...I'm hot flashing right now...but as I said before I'm so happy inside my heart....and I know it is only coming from Him above! Write back because I'm dying to hear from you! I took a pain pill today...it seems I'm being able to space them out a little more which makes me happy. He is wanting me to alternate the Darvocet with the Oxycodone...I called him today and waiting for him to call back because I know the Oxy is going to have to be refilled!

Jamie I'm so glad you are getting to see all of this because I want you to be a part of this.

Allison, I think about you, too! and I pray for you often! I am so happy that you are finally getting some relief! I have felt good for the past few days and I am almost afraid to admit it...because everytime I start to feel good and I announce it, bam!...my Crohn's flares up with avengance!

I HATE being on this prednisone! I am taking 60mgs a day and it is horrible and yes, my appetite is out of control right now. ha!

Their is NO amount of Demerol that can even come close to giving me ANY pain relief. Demerol just doesn't cut it for me. I have to take Dilaudid, it's a WHOLE lot stronger than Demerol. Have you tried taking that before. AND for some reason OXYcodone doesn't do anything for me either. My doctor wrote me a prescription for some back in february and I have only taken 2 pills. When my pain is not that out of control I respond well to ULTRAM but when I get like you got recently I have to take Dilaudid orally. You may want to ask your doctor about prescribing you some of those. They work wonders when your pain becomes so severe.

and yes, you are SO right...it's much more important that you fight for your life right now--not worrying about working. Your main priority right now is getting your belly healed up! :)

Please let me know how you are doing now. I hope you were able to get in touch with your doctor.

hey kelly...I know...things havent been good...I'm so sorry..I have a treatment today around 4...so home health will be coming to the house...I will have an update either tonight or tomorrow! Miss and love you and think of you EVERYDAY!

Hey There. Your last post was in August and I'm wondering what has happened since. My partner is in the EXACT same position as you upto the point in august. She has swelling, has had multiple surgeries to fix her endometriosis that has always been blamed but now ruled out. Her swollen tummy looks exactly the same as your pictures, her hands and feet etc are also swelling. I'd love to have a conversation with you to share tips, advice, any progress etc. darryl.trushell@gmail.com - please email me! I've gotten hold of some medication that is supposed to do a great job with the Crohns we now feel she has, but would like you opinions.

"He's Still Working On Me" A Little Bit About Little Me

I created this blog to tell MY story to anyone and everyone that God desires.

Age 6: I accepted Jesus Christ as my Lord and Savior. I was introduced to my first love, my strength, and my best friend. My life changed!

Age 18: I met the one my heart desires. Andrew James Hope. I was introduced to my companion, my confidant, and my soul mate. My life changed!

Age 21: I was diagnosed with an incurable disease. Crohns disease. I was introduced to pain, decisions I never thought I would have to make,
and something I would never be able to rid of. My life changed!

These are three key points in my life that have added to the foundation of who I am today. Briefly I will tell you that my Crohns is very specific in the sense that it is not like all the other Crohns cases. My case is almost to the point of being termed untreatable; therefore, physically I am in pain and mentally/emotionally I am exhausted. So to say things are hard right now is an understatement.

However! I AM receiving blessings daily! God is seeing me through this as well as Andrew, my family and my friends!

*If you are a follower of my blog and you are suffering with a disease that needs more awareness, leave me a comment and let me know! We will place your ribbon, disease, and name on the wall! God gives each of us a journey! Everyone's journey in life is different! Let's bring awareness to these terrible diseases, disorders, syndromes, etc. and ultimately together FIND THE CURES! God Bless!